I'm in such a crappy place with all this!

Symptoms & Treatments Medication
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Hi.

I am having a bad cycle of pain. Cannot chew solids, floss my teeth, or unfortunately, some days, speak. The speaking part is tough because I have an eight year old daughter. And my breath is the worst! Any tips for how to manage dental hygiene while all this is going on?

I also notice that I have shocks (I call them zaps) when I turn my neck sometimes. I am learning to be very still and quiet. I am worried about driving.

Whatever. Boo for me, right? Welcome to the club. Glad you’re all here to talk to.

I have been on 1600 Tegretol for many years now. This past year, as the pain was increasing, I slowly added and increased Gabapentin, up to 2000mg a day. And last week, my neuro added Baclofen, starting at 30mg a day and going right to 60. I don’t think it’s helping. I had one day of relief and today I’m right back to horrible pain. I am exhausted, though, and don’t think I can take any more Baclofen than 60 a day.

I also have some CBD oil. I tried it for a week and didn’t get any relief. I do see from other posts that it takes longer than that to work. Yes? Not sure I can open my mouth wide enough to do it again but I will try.

I am going for Laser Treatment next week. I see mixed reviews. I am praying.

I have begun researching surgical options. My neuro got really chilly when it seemed like the old drug routine wasn’t working and had no suggestions about who to call. I’m in Boston. I have the beginnings of a list but could use suggestions if you have them.

ALSO - I have these involuntary hand spasms. Like when I’m hovering over the keyboard or my phone, my fingers twitch and I hit a key by accident. I’ve had these a long time but the Baclofen seems to be making it much worse. Anyone have this problem? It’s driving me nuts! Especially when I’m using the computer and my fingers twitch and I keep opening the online dictionary by accident. So annoying.

Well, I think that’s my complete list of complaints. Today.

Sending thoughts of relief and peace to all of you.
Faye

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Involuntary muscle movement is a known side effect of epilepsy meds, it can develop at any time and, most importantly, the twitching can become permanent. Keep track of twitching/spasms carefully! You’ll have to decide if you can live with or not.

Chances are what has happened is the increase in gabapetin has made the tegretol work better (have better bio-availability, gabapentin is known as a “booster” for epilepsy meds) and you’ve hit a dose that causes you to twitch/spasm. Unfortunately it doesn’t sound like it’s doing much for your pain, though, which is what can happen in this horrible situation. Since baclofen is a muscle relaxer it’s probably making the spasms more noticeable, but that’s just a theory, I don’t really know for sure how baclofen would play into it all.

I take gabapentin and depakote for ATN and migraine. I get random, minor, twitching in my thumb for the first three hours after I take depakote then it settles down and it doesn’t happen every day. I spoke with my neuro, she said since it wasn’t interfering with my daily activities and lasted a finite amount of trackable time it was my decision whether or not to stay on the combination of meds. I would rather have the occasional spasm in my thumb than blinding nerve pain (not to mention migraines that are worse than what I already deal with even on daily meds).

When brushing your teeth do you use warm water? Try that…also I start brushing on the okay side and work around to the painful part, the brushing action seems to warm up the bristles and that seems to help as well. I also gargle with listerine to try and clean my mouth and freshen my breath. Altoid mints will help as well and some people say that the strong mint helps with the pain as well. You can also just squirt toothpaste in your mouth and smear it around with your tongue. ACT has a mouth rinse that has fluoride in it you might want to try since you’re not getting any regularly via toothpaste.

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Not Boo for you… this is a Class A+ Beast condition! It takes the most out of the best of us. We just need to be able to recharge our shields and keep fighting… :muscle:t2::star:️
You sound similar to me, I have type 1, and have had several rounds of what you are describing.
I realized the triggers- my skin was sensitive to touch, sometimes in my mouth too.
If you move your head, the skin moves, almost immeasurably, but it will move. Same with laying down. Kudos to listening to your body.
My kids were about ages 10-6 at the worst time.
I wrote things out for them. They had 8x11 whiteboards from school. We used this to communicate. Sometimes all they needed was a smiley face and an “I :heart:️ U”

They understood that my lack of facial expressions did not reflect on them, and we made up for it with extra snuggles and quiet time together. It’s scary for us, and terrifying for them.
We used a pain scale of 1-5, they could ask and I could respond, they understood that it changed.

PLEASE PLEASE PLEASE find another Dr, one that does not just value you for the consistent appointments and scrip maintenance. That’s easy money for them.
This site Is where I found 2 of my TN Patient approved Dr’s. Insurance companies will discuss an appeal if there is not a specialist in your area, I think 50 miles. Traveling a little farther could make all the difference.

I have realized that an MVD, although scary sounding is the best option for us in the right hands.
The longer our nerve is allowed to be compressed, the more irreversible damage is being done. The Teflon will help cushion that damaged nerve.
I wish you the best!!! I’m not on here a lot, but I love to talk, as you unfortunately can probally tell! and my meds have the best of my brain, so I apologize for my lack of articulate words!
Tiffanie :shield::muscle:t2:

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Oh, and teeth, ya, that was hard, I used small amounts of diluted mouthwash. Gently letting it stay in my mouth. Then just dropping into the sink. I used straws to get water in my mouth. Couldn’t drink it.
ps: after a few weeks of this, I was getting worried about hydration and food. I made my first TN Emergency room visit. Brought in printed info. Typed history into my notes on my phone. And they shot me up with Dilaudid. It kind of kicked the pain off track for a while. :muscle:t2: Was a bill to pay, but worth it.

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Try finding a upper cervical chiropractor. Not a regular one. They know the condition and help a lot.

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So what should we look for in a NUCCA Chiropractor.?
How do we know which on to choose.There are two in my area.
Looking at google reviews lets you see something- for sure not the truth

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Try calling both and asking how familiar they are with TN and check
prices. Mine took extensive xrays so it was expensive at first but the
visits are $50 now. Remember I’m in California where EVERYTHING is
expensive. Let me know

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Sending hugs and healing wishes your way.

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I am sorry that I took so long to reply. I have been up to my neck in life stuff and now that the busiest time is over, my TN has reached crisis mode. How I kept it together until today is a mystery. I really appreciate your wisdom about the twitching. I immediately dropped down my dose of Baclofen and the twitching went away. And I woke up, which was nice. I feel like I’m going to be here for a bit now, so I am sure we’ll talk again. Thank you!!! - Faye

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Hi, Tiffanie. I have finally unwound myself from some of my responsibilities, and reached crisis mode with my pain, which means I’m reading and writing back to people way too late. I took your advice today and went into writing mode with my family. My daughter made me a green note pad and she’s very proud that I’m using it. But there was a lot of time crying this morning. My husband figured out how to connect my computer to the TV so that I can type and everyone can see. Very cool. I, too, am quickly moving into MVD mode. Meds are not working and I cannot live like this. I had no idea how much worse the pain could get, and then it did. Today has been a nightmare. And yes, it is worth driving farther to find a better doc. I will see if I can find someone on this site after I’m finished writing. Thank you so much for writing and I hope that you keep sharing what’s happening with you. Best, Faye

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Ok, I’m figuring out how to do one large reply. Sorry if I’m bombarding this topic with words, but hey, I did start it. :slight_smile: Siminative, I had never heard of an Upper Cervical Chiropractor but I’ll start looking into it. Thanks. And flowerpower, thank you for the good vibes! Need every one of them right now. Thank you, people. – Faye

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Hi!
My heart is heavy with what you are going through. Sometimes the pain just starts dialing down, the same way it dials up. That’s what I was hoping for you!
If it’s bad, and you can handle the ER, sometimes a heavy dose of painkillers can derail the pain. Our nerves have memory, just like muscles.
I saw Dr Ken Casey, in MI, he’s brilliant, compassionate, and is truly dedicated to Facial Pain.
There are other amazing Dr’s, Linsky in Ca, and Another in PA. I’m going to Duke in NC now.
The MVD does sound scary, but really is the healthiest option for our poor, abused nerves!
Sending huge vibes of strength and peace your way!!
Stress is a HUGE factor, anything you can do to really put your head and heart in a calm place, override the claustrophobic sensations, and try every day to just look at the clouds and breathe. A bit at a time will help. Every day. Get outside… :+1:t2::+1:t2::muscle:t2::muscle:t2::star:️:star:️ You can do this, Warrior friend! :crossed_swords:️ :shield:

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I still have strong doubts about MVD for treatment of TN. I’ve not looked of late, but it used to be that there was no evidence that MVC caused TN.

I’d like to see a double blind study, to say as much, who’s to say the general anaesthetic isn’t the contributing factor in relief. Some folk with MV compression don’t suffer TN. A third of your trigeminal nerve is not myelinated. You have arteries within the nerve in close proximity to sensory fibers.

Everyone states double blind experiments are the gold standard, and the med profession slate alternative med for not using in instances, yet they use MVD regardless for TN often with serious adverse outcomes.

Can’t get more serious than brain surgery without double blind. I’d say it was asking to be sued in the case of adverse results, when they can’t prove it.

In this post I’ve been lazy in that I haven’t looked at recent research, I’m sure mod support will put me right if incorrect

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Moth I’m with you. I haven’t done any specific research myself but just by comments on this site I have the overwhelming impression that MVD doesn’t work for TN / ATN. There might be short term improvement but should you really have brain surgery for short term relief? I say no.

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You wouldn’t be thinking of our very own @TJ1 , would you? :blush:
Seenie

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Yep, although I know all three of you do a sterling job, I’m thinking of rebranding TJ in the form of a London Cabbie i.e. ’ the knowledge’.

Wishing MOD support, and indeed everyone else a Merry Christmas.

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You are spot on there aiculsamoth!

Happy Christmas to you and to everyone here too!

Christina

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Hey Zaprigl hope you are doing better. You sound like a fighter, and I’m sure your daughter is the same. I know you shower her with love, so do not worry about her more than any other mom would.

I am at 1200 Trilptel and 1200 Gabapentin, but they just keep my pain at bay. I have found oxycodone does wonders for me, and lets me live a normal life for several hours. Opiods are a little scary, but not as scary as brain surgery. As long as you are taking them for pain and not for pleasure, you should be okay.

Speaking of brain surgery, I didn’t have an MVD, but I had a craniotomy to remove a tumor from inside my left eye’s orbit. They saved my vision, but my pain persists. All surgeries for us are like that, because they just cannot say whether a certain method will work or not. I’m considering gamma knife, but I’m only 31 and don’t want to have such a large blast of radiation so close to my brain, because my doctor thinks I may need to gamma the whole nerve away, which he did have success with in other TN sufferers.

CBD oil didn’t work for me, but smoking cannabis did. You are in Boston, so you can try a few different strains, because just like prescription drugs, each strain of cannabis reacts with each person’s unique pharmacokinetics in different ways. I would try that if I were you.

My left eye twitches, but that could be because my surgery was two months ago.

And go find another doctor! I know it sucks to go do that, but he sounds like other doctors I have had, and several of those missed the tumor that caused what seems like permanent nerve damage in my skull! You deserve to be treated as a human being, not a paycheck.

Oh, and do you have clicking sounds in your jaw? Or any possible TMJ? Or grind your teeth at night? I am not a definite TMJ case, but I have the clicking, and I have a permanent retainer to keep my teeth straight that also has hooks for rubber bands to realign my jaw. It seems to help, and I wear a mouthguard at night because I grind my teeth. That could be an avenue worth exploring if you haven’t already